The Continuing Adventures of SuperPreemie

Redefining “OK”

Posted on: November 17, 2009

November is prematurity awareness month, and November 17th is Unite: Fight for Preemies.

On November 17th, 2004, Shoshanna should have been seven weeks from being born; instead, she was 23 days old.  She was pushing three pounds, and, according to what I wrote at the time, starting to put on enough chub that sometimes she actually got warm rather than cold.

Fast forward five years… to the kindergartner who can read fluently, who can add and subtract like nobody’s business, who is fascinated by robots and wants to be a football player when she grows up.  I’ve said it before but I’m going to say it again: it is shocking how lucky we have gotten.  SHOCKING.  Every time someone asks me, “But she’s ok now, right?”* and I can honestly answer, “yes, she’s more than ok,” I think about how lucky we are.  Every time she shows me how high she can jump, every time I ask her what she did at school and she says, with a resigned sigh, “I can’t muh-member”, every night when I go in to check on her before I go to bed, I remember how lucky we are.

As lucky as we are, as amazing as Shoshanna is, we are reminded every day of where we came from.  Every morning when we give her her meds as soon as we all wake up, later on when we muscle her feet into her SureSteps, whenever we notice the scars on the backs of her hands.  She’s ok now, but our brand of “OK” just happens to include hypotonia, gross motor delays, and continuing GERD.  Our brand of “OK” has physical therapy twice a week and is being watched for fine motor stamina issues.  Despite all this, ours is the best possible “OK” we could have imagined on November 17, 2004.  In so many cases, a preemie family’s version of “OK” includes millions more challenges than the ones we have.

So what do we do?  We tell our story, we work with the March of Dimes.  We try to educate people both about the challenges that preemies face and about how to avoid having a preemie of their own.  We worry, about Shoshanna and how many more shoes there may be hanging over her head waiting to drop, and every time someone we are close to gets pregnant.  We refuse to buy presents for babies-on-the-way before 36 weeks gestational age, and we calculate gestational ages and odds and potential problems in our heads every time we talk to a pregnant friend or acquaintance.  This, too, is part of our “OK”.

Today is prematurity awareness day, but for everyone who’s living the preemie experience, it’s just another day living that redefined version of “OK”.

*It should be noted that the only “acceptable” answer to this question is yes.  As many of my fellow preemie parents have observed over and over again, nobody wants to hear about the problems of the older preemie, no matter how life-altering those problems may be, and especially if the child shows no physical indications of ongoing challenges.

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6 Responses to "Redefining “OK”"

I don’t mind the prescription part as mush as I mind the passing of responsibility.

[…] Redefining “OK” « The Continuing Adventures of SuperPreemie The story of SuperPreemie Shoshanna who is now a kindergartner. […]

We’re so grateful for our niece! We’re glad she’s healthy and strong and smart and fun and kind and funny. And she’s the best big cousin Cora Bean could ask for.

Sarah:

Thanks so much for sharing your story. It’s great to hear that Shoshanna is doing more than “ok” . Thanks for your support and for everything you and your family do to raise awareness. It is so important that everybody understand that all babies need their 9 months. On behalf of our organization, we thank you for supporting this event and our mission.

You make such a good point. My 33-weekers are more than “OK”. Yes, they get lung infections from time to time, but they’re ahead of the curve on all their milestones, and that’s even if I go with their birth age! Yes, they’re petite, but so am I.

The Bloggers Unite Preemie event has definitely been a reminder of how deeply fortunate our family is.

Jason here from BloggersUnite. Thanks for being part of the BloggersUnite event, sharing your story and helping to raise awareness for the March of Dimes and all they do.

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